[Editor's note: Jane wrote this in response to a member of our new DHC list complaining too many posts were not related to deaf/hearing couples and their issues.]

I read your post with a great deal of interest. I'm on the Hospitality Committee of SWC. I'm going to be very frank - many times this committee has discussed just the issue you have brought up. We try to figure out ways to talk more about our ears, but inevitably, we end up talking about other things too - what many people remind me, fairly often, is that we are more than our ears.

I have been with SWC for the past three years. In fact, this month is my anniversary. I came here when I was just diagnosed with hearing loss. I knew then, in my heart of hearts, I was going to lose my hearing rather quickly. I can't tell you how I knew, but I did. It took just two years for me to become deaf. And in this past year, I've grown even deafer.

When I first came here, I was on the list called Connect. I was heartbroken at the time. I was scared. I didn't know anyone under 65 who wore hearing aids! I have a degree in deafness rehab - I could not apply one iota of that knowledge to myself.

To my advantage, many, many others on Connect were in the same boat - new to hearing loss, scared, uncertain. We all shared our hearing loss experiences, and we all learned from that sharing.

Since that time, the vast majority of Connect has settled down with their hearing loss. Few, if any, have traveled the road I have, becoming deafened. And I found, as you did, that after a while, the conversation was often no longer about ears and hearing, but about other things that occur in our daily lives. And many times I was again reminded that we are more than our ears.

Right now, I am struggling mightily with my deafness. Communication in my home is almost non-existent. I have buried myself in work and school and those around me think I am content and perhaps even learning to accept of my deafness. I can assure you, I'm not close to that stage.

And like you, even though I am thoroughly ensconced in SWC, there are times I wonder if it's the right place for me. I have a need to talk about my hearing; my deafness effects every aspect of my life. My hearing loss has not stopped; I cannot understand how one can be deaf, but still hear a sound or two. I cannot understand how a deaf person can get even deafer. I can say, that because of a few good friends I have made here, I am learning.

I can also say, that it's been a very long while since I have posted anything to SWC regarding my hearing loss. I cannot. As you said, the atmosphere doesn't seem all that conducive to sharing something that is so painful, so emotional. So when I am having a hard time, I will contact a few friends privately, or work things out on my own. Not the purpose of a support group, right?

Yet, there is something about SWC. I dont know what this list was like before you all hooked up with us, but I have been told it was pretty quiet. I was so looking forward to joining this new part of SWC, because as I have said, my relationship with my hearing husband is changing dramatically. I have a need to talk about that so badly. I want to share my experiences; I want to "hear" your experiences so badly; I want to know that others out there, like me, are also frustrated! I want to know how others work through that frustration, what do they do to keep communicating with each other? Can we survive this?? Honestly, sometimes I do wonder.

I also want to say, that getting into my heart like this is not easy. There have been a few times when I've tried to post to this group in particular. I've gotten little response, and again, as you said, from the same person or two. As a member of the HC, I have tried to spark a diaglogue. I am so sorry, both for you and for me, that I have been unsuccessful.

I would like you to know, that I survive deafness by signing. I have adopted many deaf ways; I do not want an implant; I want to find my way as a deafened person. I believe, while I am hurting now, while my relationship is struggling to adjust to deafness, that in time, we will persevere. I know we'll be ok.

I have also learned, through SWC, that each of us deals with hearing loss or deafness in our own ways. Sign may work for you and me; but it doesn't work for many. And I have to say, even though I am posting this publicly, I'm not sure why so many are so resistant to sign. I cannot imagine being deaf without signing. But that's a whole different topic!!

As a member of the HC, I am truly sorry you are not finding what you want and need here. Your feelings, your angst, are mirrors of my own. I am sorry too, that it took such an emotional, strong post by you, a post that expresses significant discontent, to get me to just spit out feelings that are very appropriate to discuss on this list.

I am a member of SHHH too - it's not for me. I have not given up my membership, but to me, they are very HOH - these people want to hear, and will do anything to hear. I cannot do that. I just don't fit there. ALDA, well, most people on SWC who know me, know that I found a home with ALDAn's. I have few words for the feelings I experienced at the ALDAcon. Suffice to say, that for the first time in about 3 years, I felt I had a place where I belonged!

At any rate, perhaps, instead of leaving, you'd be willing to help provide some exciting, stimulating, posts to this list? Perhaps, by doing that, you could help others on this list, such as myself, to find a comfortable venue to express the hearing loss issues we want to talk about, but don't always know how? Perhaps, you could start some hot debates - signing is a VERY hot issue!!

This list has been soooo quiet; just perhaps you'd think about how you could help. Believe me, when we do something like that, when we try to help others, when we try to get others to talk about feelings we ourselves have, and when we share these deep, sensative feelings, we not only help others, but we do help ourselves. That is true support.

Please understand, I do not mean to preach. I just have a loyalty to SWC, even through at times it is not what I really am looking for. But I have learned that the way to get what we need is sometimes to start the conversations ourselves. I hope you take this in the spirit it's meant. SWC cannot be all things to all people. But this DHC list could perhaps use a spark. And honestly, from your passionate post, you sure do have one!!

Whatever you decide, your honesty and candor is most appreciated.

Next

Back to Table of Contents